I recently did the 4 point saliva cortisol test and the result was low cortisol at all 4 points, but particularly in the morning. It helped explain why I find it so hard to get out of bed and struggle with low energy all morning. My DHEA is also low.
I then had a Short Synacthen test and the result came back normal, which I believe rules out Addisons disease. My next endo appointment is not until the end of August which seems like a long time to wait.
I’m wondering what the next steps are. Obviously it’s good news that it’s not Addisons, but am I right in thinking it could still be secondary adrenal insufficiency? Is there a test for that? Could it be something else causing low cortisol? Is there anything I can do in the meantime? My endo (via his secretary) advised against taking Adrenal cortex. I don’t know his reasons for this but will obviously ask when I see him. Would taking DHEA be a good idea? I welcome any thoughts/suggestions you have.
Thank you.
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Andie222
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Could you post the results and reference ranges for the saliva cortisol testing you did, please, for both cortisol, and DHEA if the test included that result.
And ask for a copy of the results and ranges for the Short Synacthen Test (SST) you had done. You probably need to find out the phone number of the endocrinology department secretary. Alternatively, if that gets you nowhere, the website of the hospital that did the SST will have a department that deals with medical records. They should give contact details on their website. You are legally entitled to have copies of all your test results.
Be careful not to post any info on the forum which could identify you personally.
For info on the SST this link is helpful - see pages 68 - 70 - it tells you how the SST should have been carried out. But the way the test is often run is to measure cortisol but not ACTH to save money. This means that doctors can rule Primary Adrenal Insufficiency in or out but not Secondary or Tertiary. They do this on the basis that Secondary and Tertiary are "very rare". But then of course they are "rare" if you never test for them. :
The SST tests whether your adrenal glands are capable of producing cortisol in healthy amounts. The test works by injecting a synthetic form of ACTH called tetracosactride.
ACTH is produced by the pituitary to stimulate the adrenal glands to produce cortisol (similar in action to the pituitary producing TSH to stimulate the thyroid to produce T4 and T3).
If you passed the SST i.e. after stimulation your adrenal glands produced sufficient cortisol then your adrenal glands are working and you don't have Primary Adrenal Insufficiency. But if you don't produce enough cortisol for your needs without the stimulation by ACTH/tetracosactide then you might have some form of Secondary or Tertiary Adrenal Insufficiency, and it is ACTH that you have too little of.
The different types of Adrenal Insufficiency are described here :
Another member of the forum passed the SST on the basis of having produced enough cortisol when her adrenals were stimulated. But the saliva test showed very low levels of cortisol when unstimulated. In the case of that member her cortisol improved dramatically when her T3 level was improved when she was prescribed Liothyronine (aka T3).
Do you have very low levels of T3?
I know there are other causes and treatments of the adrenal glands only producing low levels of cortisol unless artificially stimulated but I 'm not knowledgeable on the subject. See the link above (***) on the subject of adrenal insufficiency types for more info.
Have you ever gone through childbirth and haemorrhaged dramatically? If you have then you could have a damaged pituitary caused by necrosis. There are a small number of members this has happened to and they had this condition :
Hello humanbean Thank you for your reply. My cortisol and DHEA results are on the chart below.
I was given the cortisol number for the SST test on my discharge letter from hospital (I was admitted for 24 hours because I had a reaction and they wanted to monitor me) and I clearly passed (I can’t remember the number now but I looked it up to double check). I don’t know about ACTH. That wasn’t mentioned so I don’t know if it was tested.
I am taking T3 and my levels of both FT3 and FT4 are in the upper quartile with TSH suppressed.
I’ve been through childbirth with significant blood loss, but not haemorrhaging.
I’m interested to hear that you had a reaction to the SST, because so did I, and it was misdiagnosed as an allergic reaction to Synacthen. My cortisol level on the test was ok but didn’t show a rise, my BP crashed, my larynx went into spasm and I struggled to breathe for about 10 minutes, and I had myoclonic jerks of my limbs and face for about 45 minutes and went extremely cold. Then they sent me home! I had been on an inadequate dose of 50 mcg Levo for a long time and I think I was very hypothyroid at the time, and there is a strong adrenal/ thyroid connection. No doctor I’ve spoken to since has suggested it was anything other than an allergic reaction, but I have since proved them wrong by having a repeat SST with a slow IV push, and it probably helped that I was on a steroid by then, Fludrocortisone for low BP, which in my opinion (though not the doctor’s) invalidated the cortisol result. I think personally that if you have been very hypothyroid for a long time, which has likely affected your adrenal function as well, you can react badly to this test, but the doctors seem completely unaware of this, and just tell you your cortisol number is within normal limits. Clueless!
That’s very interesting. Sounds like you had an awful time of it.
My reaction was nausea and dizziness. My BP dropped to 60/30 and my heart rate also dropped. I was sweating buckets (which as a cold person was very unusual). I’m told I passed out but it must have been brief because I think I remember everything. Quite a scary experience. They couldn’t find a reason for my reaction…and suggested that perhaps it was a reaction to seeing the needle. After many years of blood tests I sure that wasn’t the case, but it was about a minute after they injected the synacthen that I felt nauseous.
I’m on T3 and T4 and my blood levels are good so I don’t think I’m very hypothyroid. Having said that I do have lots of symptoms, hence the SST. They took the bloods at 30m and 60m and I was told my reaction wouldn’t have harmed the result.
If you had a normal result for your 2nd SST, what were the next steps?
Your BP crashed as well. You’re the only other person I know of that’s described this happening. It was after a minute or two after the IV Synacthen with me too. Saying with you that it was the sight of the needle is a particularly pathetic explanation. At least they kept you in. They just sent me home, didn’t even report to the endocrinologist what had happened, and it was just dismissed as allergy, which it wasn’t. I felt ill, weak, emotional and jittery for about a week after that. On the second SST my BP crashed again when they gave me an IV antihistamine. On the 3rd SST, I asked for a slow IV push and I was ok, and that proved I’m not allergic to Synacthen . I don’t reckon much on the normal result though, as I was on the steroid Fludrocortisone for the second and third SST ‘s, which comes out in blood tests as cortisol, unless you’re off it for 2 weeks. The doctors don’t seem aware of that however. They also told me that even such a bad reaction would not have affected the cortisol result, which I think is rubbish. I was so ill the fist time I thought I was going to die, and my cortisol didn’t even rise. Perhaps you should submit a yellow card describing your reaction to Synacthen. That’s what I did. If they get enough reports maybe they’ll look into it. As for the next steps, I was discharged from one hospital, and have an annual endo appointment at the other. It was 5 years after the first SST that I got my Levo increased from 50 mcg by a private endo. I had been on a very low dose for years, and the NHS doctors had all kept telling me my dose was fine. I’m afraid I don’t believe what most of the endocrinologists say anymore.
I don’t think the SST is that brilliant a test anyway, unless you are practically devoid of cortisol, and have no adrenal reserve. I found the Genova Diagnostics saliva adrenal profile with DHEA useful though. Gives you more idea what’s happening.
It was brave of you to go back for a 3rd test. I’m not sure I would have had the courage to do that after the first two.
Even 50mcg is a low dose. I was kept on 25 for a couple of years initially, not realising an increase was an option. Then I got pregnant and they increased it to 50. That was still inadequate but I didn’t realise at the time. Everyone said being pregnant was exhausting so I just thought that was normal. I hope your dose has been increased since then.
Ah yes yellow card is a good idea. I will do that.
Yes, the 3rd test was very stressful to say the least. The Medical Investigation consultant was in attendance with a trolley full of meds, just in case, but I was determined to prove that my bad reaction to Synacthen wasn’t because of allergy. However, there’s been no interest in explaining what the actual reason was. 50 mcg when pregnant is not good at all. I had my son pre-diagnosis, had a long labour, and he was small, and struggled to put on weight. I think now it was because I had undiagnosed hypothyroidism. I know what you mean - you just assume everyone is that exhausted with having a baby. I’m glad your dose is better now, but it doesn’t mean your adrenals aren’t struggling after all those years on a low dose and with trying to compensate for low thyroxine levels.That’s how I feel anyway. But I’ve found you’re not taken seriously unless you’re diagnosed with Addisons Disease. I’m reading Dr Barry Peatfield’s book at the moment. He has a good description of the adrenal/thyroid connection. I finally got a diagnosis of ‘borderline adrenal function’, which has meant I can get a one-off prescription of Hydrocortisone if I have any procedures done, eg dental work. And on those days I feel great!
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